The Finn Beaubien Family
Florence was born on July 11, 2020, during the early peaks of the Covid-19 pandemic. As many in our scenario can attest, it was an incredible time to become a parent. Nearly paralyzing, pregnancy-pushed-pandemic-fear met with the most intense love, intimacy, and empathy one can imagine. Amid all the surrounding sickness and loss there was our perfect baby Florence, alive and well.
Flo’s first year was full of epic love. We read books, swam, sang and danced together as a family. We fell in love. We also met Flo’s first challenges, at her nine-month check-up her pediatrician noted that she was not yet sitting and suggested we begin physical therapy. At ten months, Flo started her PT journey and immediately started making progress, she was sitting in no time. For assurance, we pursued the testing offered to us.
November 15th, 2021, we received our sweet baby’s diagnosis, STXBP1 Disorders, not even deserving of a proper name. As her mother, I will never forget receiving the long-anticipated call. I got the news alone, in my car, in an industrial neighborhood in Detroit during a visit to an artist’s studio. I can only clearly remember a few snippets from the conversation with the genetic counselor… I was told this was a catastrophic neurodevelopmental disorder, Florence would never live alone. She will have lifelong physical and intellectual disabilities. She might not walk; she might not talk. Severe epilepsy could appear at any time. The genetic counselor also explained that this disorder was the result of a spontaneous occurrence, meaning Flo’s father and I do not carry the genetic mutation that has altered the course of all our lives.
STXBP1 Disorders was discovered in 2008 and although there are less than 800 known cases, it’s believed that this disease presents in 1 in 30,000 births or over 10 STX’ers born a day. Currently STXBP1 Disorders has no treatment and no cure and the oldest known living person with this disorder is in their early 40s. All children with the disease present with intellectual disability (most severe to profound), most do not walk, very few are ever potty trained, more than 90% will not acquire expressive language, 95% have epilepsy and more than 90% have motor deficits, such as dystonia, spasticity, ataxia, hypotonia, and tremor. Other features include developmental delay, hyperactivity, anxiety, aggressive behaviors, and autistic features.
Since our diagnosis day, we have felt so many things and cried for many days. Florence works extraordinarily hard to meet the challenges that she is facing: her weekly dance card is full with seven different therapy appointments and many doctors’ visits. She continues to light up every room she enters, emanating joy and determination. Not being able to protect our child from the reality of this disease inflicts incredible pain on us as parents—pain that no family should ever have to endure. We have hope and at the end of each day is the promise of a cure for STXBP1 Disorders. We are so lucky to have an incredible foundation, doctors, researchers, network of hospitals, all seeking to find a cure for this disease—which they believe is within reach. Time and limited resources are our biggest challenges. If the past two years have taught us anything it’s that we have the power to accelerate science.
About Florence’s Parents
Sam Beaubien is Florence Beaubien’s biggest motivator. He is also a composer, musician, producer, audio engineer & educator. He received a BFA in Music Education and an MFA in Jazz Composition from Wayne State. Sam is founder and bandleader of Will Sessions, he is also Creative Producer at WDET, Detroit’s NPR Station.
Bridget Finn is Partner at Reyes | Finn, a contemporary art gallery in Detroit, MI. She is also co-founder of Art Mile | Detroit, a citywide digital art exhibition that champions Detroit’s vibrant and diverse arts community. Bridget received her BFA from The College for Creative Studies in Detroit. She is on The Board of Trustees of Independent Curators International (ICI) and New Art Dealers Alliance (NADA). Her greatest joy and achievement is being Florence’s Mom.